[momzpeachy]

Hi everyone,

I haven't posted in a while because I was really not well for a while thanks to this wonderful disease. I then started Ketamine and went for the 10 day outpatient program. My last day was a week ago yesterday. I felt amazing during those 2 weeks. I felt somewhat normal again. The inflammation went down, the redness was almost gone, and the pain level went from a 10 to about a 2 by the 3rd day of ketamine. I was so happy. The last day, I walked out feeling awesome..not even tipsy that day and my dad and I went out for lunch. I wasn't even tired the whole day.

Well, by Tuesday the pain was creeping back up. By yesterday I was in a complete flare all over. It was horrible. I was in so much pain I could barely move and all I wanted to do was cry. My Dr knew that by Thursday I wasn't to good and I'm scheduled for boosters next week. They called me yesterday and brought bad news. After 10 days of ketamine, the relief should last longer than it did for me. I shouldn't be back to where i was already so now they may cancel the boosters and ketamine all together after next week. AAAAAAAAAHHHHHHHHHHHHHH!

I am so upset now because that leaves me with nothing! It worked but not for long so now what's next? They don't have an answer other than I will have this forever. Wonderful! I don't know if I can take this pain forever. I'm only 37 and can barely move most days. They don't know how to treat this because everything they have tried has failed. I feel stuck and hopeless.

I just needed to vent. I don't know what's next for me now.

[AintSoBad]

Originally Posted by momzpeachy

Hi everyone,

I haven't posted in a while because I was really not well for a while thanks to this wonderful disease. I then started Ketamine and went for the 10 day outpatient program. My last day was a week ago yesterday. I felt amazing during those 2 weeks. I felt somewhat normal again. The inflammation went down, the redness was almost gone, and the pain level went from a 10 to about a 2 by the 3rd day of ketamine. I was so happy. The last day, I walked out feeling awesome..not even tipsy that day and my dad and I went out for lunch. I wasn't even tired the whole day.

Well, by Tuesday the pain was creeping back up. By yesterday I was in a complete flare all over. It was horrible. I was in so much pain I could barely move and all I wanted to do was cry. My Dr knew that by Thursday I wasn't to good and I'm scheduled for boosters next week. They called me yesterday and brought bad news. After 10 days of ketamine, the relief should last longer than it did for me. I shouldn't be back to where i was already so now they may cancel the boosters and ketamine all together after next week. AAAAAAAAAHHHHHHHHHHHHHH!

I am so upset now because that leaves me with nothing! It worked but not for long so now what's next? They don't have an answer other than I will have this forever. Wonderful! I don't know if I can take this pain forever. I'm only 37 and can barely move most days. They don't know how to treat this because everything they have tried has failed. I feel stuck and hopeless.

I just needed to vent. I don't know what's next for me now.

Momzpeachy!

Ok now....
Relax, put your pain in God's hands, (If you believe).

No, ketamine doesn't last long for most anyone.. it's a trial type of thing.
I had lidocaine, and it did fairly nothing...

I've had RSD/ TOS / TBI / DISCS / Sleep apnea, and on and on, I got RSD in 83, So TOMORROW, will be my anniversary.

I hope you have a good neurologist, or whoever is treating you will now explore some serious pain medication.
I've been on Methadone (with a cocktail of others), since the very early 90's.
Yes, i went 7 years with NO DX! No real meds!

I'm not saying I have it worse.
But, someone always does. So, I only can ask you to relax yourself, and soak in an epsom salt bath.
Then, make your plans for your new life.

I've lost millions, business', two children whom I raised, (who warned me it was coming), and, like that.
It can get sad.
Really Sad!

But, find your faith.
All these worldly things (Including pain) come, and go.

WE're all here for you!!
Anytime!


Pete
asb

[SandyS]

Hi MomzPeachy,

When you had the infusions, were they low dose, or were they escalating low to high dose?? Did you go into the dis-associate state? How high was the dose of Ketamine?

Sandy

Originally Posted by momzpeachy

Hi everyone,

I haven't posted in a while because I was really not well for a while thanks to this wonderful disease. I then started Ketamine and went for the 10 day outpatient program. My last day was a week ago yesterday. I felt amazing during those 2 weeks. I felt somewhat normal again. The inflammation went down, the redness was almost gone, and the pain level went from a 10 to about a 2 by the 3rd day of ketamine. I was so happy. The last day, I walked out feeling awesome..not even tipsy that day and my dad and I went out for lunch. I wasn't even tired the whole day.

Well, by Tuesday the pain was creeping back up. By yesterday I was in a complete flare all over. It was horrible. I was in so much pain I could barely move and all I wanted to do was cry. My Dr knew that by Thursday I wasn't to good and I'm scheduled for boosters next week. They called me yesterday and brought bad news. After 10 days of ketamine, the relief should last longer than it did for me. I shouldn't be back to where i was already so now they may cancel the boosters and ketamine all together after next week. AAAAAAAAAHHHHHHHHHHHHHH!

I am so upset now because that leaves me with nothing! It worked but not for long so now what's next? They don't have an answer other than I will have this forever. Wonderful! I don't know if I can take this pain forever. I'm only 37 and can barely move most days. They don't know how to treat this because everything they have tried has failed. I feel stuck and hopeless.

I just needed to vent. I don't know what's next for me now.

[SandyRI]

Never, never, never give up!!

You said they MAY cancel the boosters next week. You've got to chill, and go back to your doc and work out what your next step is going to be.

You are very fortunate that you have gotten this far, that you are with doctors of such caliber. Take advantage of their knowledge, and work with them on that Plan B. I'm sure they will help you any way they can.

The best of luck to you... Sandy

[debbiehub]

Maybe they can give you oral ketamine. I dont know if it enough to help but it may be worth a shot. My doc offered it to me once but I never did try it....
Just a thought

Deb

[Imahotep]

Don't give up hope. There's always the fight and you can find other things to occupy your mind.

Learn your triggers and seek the right balance of medication.

Best of luck.

[fmichael]

Originally Posted by momzpeachy

I am so upset now because that leaves me with nothing! It worked but not for long so now what's next? They don't have an answer other than I will have this forever. Wonderful! I don't know if I can take this pain forever. I'm only 37 and can barely move most days. They don't know how to treat this because everything they have tried has failed. I feel stuck and hopeless

Hi there. I suspect we're both alums of the same neurology department, a couple of blocks north of Philadelphia City Hall. I understand the burden you are carrying, having once carried it myself. It started with being told that I would be cured. (The success rate on the coma treatment was pretty amazing at the start.) It ended, for all intents and purposes, 8 months later, with tickets the Germany already in hand, when the German doctors disqualified me on the basis of pre-existing and well controled glaucoma, something that I had disclosed in my initial admission papers, but went apparently unnoticed. My wife and I can tell you were in the room were both were when the email came through.

But move on we do. And there are a host of stratagies. The central one for me has been whereever possible, to cultivate a relationship of non-resistance with the pain. Which is to say, to get to know it well enough that can become comfortable with it passing through you. My meditation teacher, Shinzen Young, likes to say that Suffering = Pain X Resistance. There's some interesting other stuff that can be done with analyzing pain in meditation, so that, at least to a certain extent, you can actually find some release in the appreciation of its nuance. But I would largely be going on off track. The point I do want to make is that, your current frustration notwithstanding, you come across as a pretty level headed person, not prone to catastrophizing situations as a whole, which is great.

Still, I know how hard it is being a parent, when what you can do with/for them is limited by your RSD.

That said, just because ketamine is apparently no longer an option for you, you should know that there are other options on the table including an as yet experimental technique that's currently being developed by Dr. Michael Stanton-Hicks and others at the Cleveland Clinic, involving the use of intrathecal "high-dose" ziconotide (Prialt), which in early tests has looked pretty good.

If you're interested, you might want to look at "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in a Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Management 2006;6:509-510, FREE FULL TEXT (and a couple of amazing photos) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf. This was followed more recently by "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Practioner 2009 Jul-Aug;9(4):296-303:

ABSTRACT
Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

If you would have any interest in pursuing this, it's my understanding from speaking with someone in the Cleveland Clinic's Pain Management Department, that your records would have to be forwarded to Dr. Stanton-Hicks, who has now taken senior status and agrees sees only CRPS patients after he has reviewed their records. More information can be obtained through his secretary, who can be reached in the Pain Management Department at (216) 444-7246. And FYI, while I understand that his bedside manner can be a little curt, he's also the the guy to see for this particular treatment, until it enters more widespread trials. His secretary may be able to give you more information on that, I don't know.

I guess the take home point is - as others have said - don't give up. Nor should you (entirely) despair. There will always be something new around the corner, and sooner or later, you will find a treatment that works for you. Nevertheless, in the here and now, you are dealing with terrible disappointment. But to the extent you can distinguish between that and accepting as a fact that your situation is truly helpless, you are much better off.

Mike

[RNcrps2]

I'm soo sorry to hear the ketamine didn't last. It is so upsetting to get hopes up and things not work the way we were hoping. i am new to rsd. i had an elbow injury and had 2 surgies including a nerve surg. So i had it for a year before diagnosed. Of course blocks didnt work. I feel like you. i was very active. I asked is this it? But as i research-although this is a rare disorder- there are Drs. researching and trialing everyday. (Even in other countries.) This gives me hope that in time something will be discovered. I also read how Dr. S has been researching RSD for many years and still hasnt given up. That gives me hope that this may not be forever. I am also so glad i found forums like this that i can relate and learn from others and not feel so all alone. please dont give up. momof4

[SandyRI]

FMichael - you are awesome....thank you so much for sharing your vast knowledge in such a compassionate manner.

I am deeply appreciative of all I have learned from you.

XOXOX Sandy

[fmichael]

Originally Posted by SandyRI

XOXOX Sandy

Aw, shucks . . . .